Monday, March 21, 2011

Brady's guts

I let out a huge sigh as I sat down to write this because feeding Brady has been the most exhausting endeavor I've ever undertaken.  The thick mucus caused by cystic fibrosis clogged the ducts in Brady's pancreas sometime between 2 and 3 weeks of age.  He lost the ability to metabolize food on his own because the pancreas typically releases digestive enzymes into the small intestine, to allow the body to break down food and absorb calories and nutrients.  Shortly after Brady's first positive screen for CF, he began to have some troubling symptoms.  He was tired, and had stopped gaining weight.  He was also pooping every single time I fed him, which was every few hours since he was small and losing weight.  A few more days past and he started having the weirdest blueish green poops constantly.  I will never forget the visit we had with the pediatrician that day...The results of the genetic blood test had not come back yet, but the Dr. suggested we start him on enzymes(to me this sounded like admitting he has CF and I was totally against it.)  After she explained to me that if he didn't have CF, there were no negative side effects, we decided to try.  I hoped so hard that the enzymes didn't make a bit of difference.  Isn't that twisted?  But they did help.  A lot. 
This is how we fed him the enzymes as a baby

Brady has had to take enzyme pills/beads since he was diagnosed, with every single meal or snack.  When he was tiny, we opened the capsules and sprinkled the beads on applesauce to get them down.  He learned how to swallow pills whole right when he turned 2.  He has been an expert at swallowing horse pills ever since.  I never leave the house without enzymes.  In fact, if a cop ever had to search my purse or car for some reason...he would definitely think I was a dealer.  I have little bags of pills stashed everywhere!  Currently, Brady takes about 3 enzyme pills (Zenpep 10) with each meal, or about 12 a day.  I have to adjust his dosage based on a number of factors: how much fat the meal has(more fat=more pills), and how slow Brady eats(the enzymes last for 45 min or so, and Brady is the slowest chewer in the history of mankind.)  I try to get him to eat a full meal at designated meal times, and I am a huge stickler for keeping to our routine.    Brady has always been considered "severely pancreatic insufficient" by his Dr. and actually takes a second prescription (Prevacid) to help the enzymes work better.   He also takes special vitamins with mega-doses of the fat-soluble vitamins A,D,E, and K.  If he didn't take the enzymes and vitamins...he would become malnourished, no matter how much he ate.  From what I have heard from adults, the stomach/digestive pain associated with the disease can get pretty severe.  Perhaps that is why Brady has never had any appetite to speak of from the day he was born.  I think I have heard him say he was hungry a total of about 3 times.  When kids with CF fail to gain weight properly, it is not uncommon to surgically place a feeding tube into their stomach so they can be given a special "formula"(like extra strength boost or ensure + enzymes) through the night.  I've always been terrified of that and it is has been a constant struggle to keep his weight up. 

Some of Brady's pills and supplements

 I heard an adult with CF speak the other day and he compared staying healthy with CF to training as an elite athlete.  Your job becomes making sure you are doing everything you can to help your body work at its optimum performance.  You have to be constantly aware of how much sleep you get, how many calories you eat, and how many workouts you get matter how you feel.  I typically cook special high calorie meals for Brady.  Either Brock or I sit down at the table for a meal with him 4 times a day.  Mealtime also means swallowing about 5 pills and several supplements, so we can't just turn him loose yet or half of his pills would probably end up in the dog's mouth!  I feel so bad poking food down his throat when I think his stomach hurts...but he has to have the calories.  Also, many of the pills/medicines that he takes have potential side effects of "upset stomach, nausea, diarrhea, etc..." so I can only imagine what his poor gut feels like.  In addition to the problems with his pancreas, his intestines are also affected by the CF mucus.  I saw some funky things in Brady's diaper before he was potty trained.  "The snotty diapers" were a real pleasure to change ;)  All that digestive dysfunction gives Brady what I call "the power of stink."  When you don't digest food very well, and your system is filled with apparently makes the stinkiest poops and farts on the planet.  I can only hope that, as a teenage boy, Brady uses these powers for good rather than evil!  He will likely be regarded as some sort of hero among his peers for his ability to clear a room! 

At Brady's last clinic visit, he surpassed the 50th percentile for weight for the first time in his life.  I hear that most parents worry about their kids being good at sports, smart in school, and well liked by their friends.  All I worry about is keeping Brady growing and breathing...just growing and breathing.  It is actually a bit of a luxury to never sweat the small stuff. 


  1. I totally understand how you feel and what you are going through. My 14 month old little boy(Bryson) has CF too. He goes in on the 4th of April to have a feeding tube put in :( He isnt even on the growth chart. We are just hoping that it does what they say it will. We have talked with others that have it and say its amazing...So we are hopeful!